Skip to content

Posts by Amy

17
Apr

Survivor Guilt

I miss the days when my blog was super active.  It had become a real supportive place on the internet for other people who have had a stroke.   NO ONE else will ever begin to understand what we went through.  You can explain things until you’re blue in the face and in tears, but insensitive comments and actions will continue to be made around you – by people who you thought and hoped would be totally safe to be around.  And you realize they’re not.  So, sometimes strangers on the internet are the best people to connect with.  That’s cool in a way but also makes me sad in a way.  I happen to think that social media is responsible for the impending downfall of humanity so that’s a big reason that I’ve not blogged a lot the last couple of years.  I didn’t want to provide a forum that brings up anger and narcissism in people.  I have a ton of anger myself that I’m trying hard to get rid of and I didn’t want to keep spreading it around like I used to do.  But, I know how much this place used to help people.  I’ve received e-mails from strangers all over the world telling me how helpful this blog is.  And I’ve gotten a bunch of new followers and comments in the last few months – so, I guess I’ll try to post a blog more often because I know it helps people and it helps me, too.

Anyone else have a problem with survivor guilt?  It’s not really survivor guilt I guess but that’s the closest thing that I can compare it to.  I can walk pretty well now, I can speak pretty well now.  But I still can’t do SO much, there is still a ton of stuff that I can’t do and enjoy.  And I can’t let myself enjoy the progress that I’ve made because I always think about how so many other people can’t do those things and I don’t know how to reconcile being messed up but also feeling ok with the things that I can do now.  Plus, my dysfunctional family system keeps me depressed.  People now just think that I got very sick 7 years ago and I’m doing so well now.  I sure don’t feel like I’m doing very well.

Moving to Florida has not been the emotional panacea that I thought it would be and was hoping for so much.  It still might be in time, me and my husband have added quite a bit of stress to our life in the last year when the whole point of this move was to de-stress.  We sold a house, bought a house, and moved across the country.  Within months of moving, we experienced a category 5 hurricane that all the news people down here were freaking the F out about, and in turn freaking us out. The last year of our life has been insane.  Physically though, things are dramatically better.  My muscles, joints, everything feels better and is functioning better.  Hopefully the mental catches up with the physical.

Advertisements
26
Jul

Climate

Climate change makes a hell of a difference. That is, moving to a warmer climate. For me, personally. I’ve lived in Florida for two months and I realized yesterday that I haven’t had a migraine since about the first week that I was here. I’ve had threats here and there and have had small headaches, but I haven’t had a full-blown 3-day attack replete with vomiting and being totally out of commission. This was a twice a month occurrence, at least, up north.

I’m gonna go bang on some wood for a while.

I’m walking better, my balance is better. I’m sure no one else notices this but I’m speaking better and more clearly. It’s not as much of a struggle to get certain words out. The power of susnshine is not to be underestimated.  Vitamin D supplements don’t cut it, I tried. Fake light from light boxes doesn’t cut it, I tried. I tried everything. I moved down here mostly for the mental benefits because I could no longer live in the dreary, dark, cloudy, rainy hell that is PA. (I’m sorry if you live in and like Pennsylvania but I absolutely hate it). I didn’t expect an effect on some of my physical limitations this soon. I thought stuff would be helped eventually, but not this soon.

My husband is not thrilled about living in Florida. This place certainly has some crazies living here, but it’s been 2 months and I’m in a little bit of shock how good it’s been for me and my health. And we have yet to experience a winter here and the beautiful, gorgeous weather. I could do without all the mosquitoes, though.

8
May

Signature

Buying a house in another far-off state at the same time as selling your current one is a hell-ish process and I don’t recommend it.  Unless you’re like me and you’re absolutely suffocating in your current location and need to live somewhere else for the sake of your mental health – then I highly recommend it.  I thought that having a stroke, being in the hospital for a month, and having your entire life turned upside-down and inside-out was the closest that I would ever get to HELL-ON-EARTH.  Ummm, yeah it was.  This whole house buying/selling process has been like a vacation compared to that.  This has been great.  I’m sure my husband would agree.

So anyway,  we’re done tomorrow.  The house in Florida is ours now and we close on our Pittsburgh house tomorrow.  Then we’re done with all this crap.  When we drive back to Florida on Monday, we’ll just be driving home.  To our house.  There will be no uncertainty, anxiety, stopping at a hotel in West Virginia in order to print out and fax documents.  No panicky phone calls and e-mails, we actually get to enjoy this road trip.  Either the person that sold us the house or the selling realtor sucks.  I’m not sure where to place blame, but one of them sucks bigtime.

The closing of our house required signing A LOT of paperwork.  A LOT.  Not being able to write is one of the most devastating things for me about being alive, so that was fun.  We got a Power of Attorney drawn up so that Pat could legally sign everything on my behalf.  When we went to apply for a mortgage is when I became aware that this would be necessary.  There was a ton of paperwork to sign then too.  And I had to sign everything myself.  We didn’t have the POA yet and the guy had to witness me signing.  So, I had no choice.  He kept saying to me “it doesn’t matter what your signature looks like.”  Thanks for trying to make me feel better dude but that’s not at all the problem.  The problem and what makes me so upset is not the illegibility of my hand-writing.  It’s the physical act of putting my right arm/hand in the writing position.  That very act makes me cry.  Placing my arm in that position sets off a series of events inside of me that ultimately ends up with me in tears. Good thing that medical records have pretty much all gone electronic.  There are a ton of people who hate this and complain about it, but I sure as heck am thankful for it.  I certainly wouldn’t be able to do this job if it involved any writing.

27
Apr

St. Petersburg

I’m closing on my house in Florida tomorrow.  I finally feel like for the first time in my life I’m really doing my thing, what I want and not conforming to some vision that other people came up with as to what I ‘should’ do or how I ‘should’ behave.  I’m doing what’s best for me and my husband, and our marriage.  That’s certainly what matters most.

We arrived in St. Pete last night and have been exploring the city since we got here.  On foot.  We’ve been walking around.  I remember when I wrote this post.  When I wrote that, curbs were really scary to me.  A small curb felt like a freakin’ mountain.  I remember the feeling, the fear.  Anyone reading this that never had a stroke, going up and down a curb is second nature to you and doesn’t require any concentration whatsoever.  Have a stroke, that changes.  Drastically.

But walking around this flat city, curbs are no longer scary to me.  I won’t say it’s second nature for me, I’m still very aware that it’s a different level of ground, but it doesn’t require much extra concentration for me to navigate a curb.  I squeeze my husband’s hand a little tighter when approaching a curb but I don’t have to think about doing the whole ‘Up with the good, down with the bad’ thing anymore.  6 years after the stroke and it’s so different and better than those first couple of years post-stroke.  So, so much better.  It gets better.

26
Mar

Sitcoms

The idea for this blog post has been rattling around in my brain for a while so I finally decided to get it out of there and write it.

Apparently, having a stroke is hilarious.  I’ve noticed on several TV shows lately- I’ve noticed this quite a bit in the last 6 years –  but it seems to have been very concentrated lately.  In recent episodes of multiple shows, the common thing to say when someone is acting weird is, are you having a stroke?”  I’m wondering if there will ever be a day in the future that I will see that or hear that and it won’t have an effect on me.  6 years later and it still has a major effect on me.  I so wish it didn’t, but it does.  Will there ever be a day that I’ll be apathetic and unresponsive in the presence of some insensitive joke on TV?  Or insensitive people? – which are RAMPANT in this world.

I dealt with my trauma mostly with humor.  Self-deprecating humor.  I think resorting to comedy is a very common way to deal with horrible things.  It’s how I dealt with it most of the time.  Certainly not always, but when I wasn’t a basket case of tears or unbelievably angry, I was laughing at myself.  I know it’s how a lot of you have dealt with it.  The problem with self-deprecating humor is this – other people see me make fun of myself and think that means I’m comfortable with jokes being made about certain things regarding me, strokes, whatever.  That’s not the way self-deprecation works.  It has the word ‘self’ in it.  I can make fun of myself all I want, you cannot.  There are 3 people on this planet that have liberty to say absolutely anything to me, about me, around me, etc.  Everyone else – no.

The fact that TV shows think it’s for some reason funny to say “Are you having a stroke?” doesn’t make sense to me.  Most people don’t know how to be funny and are not good at it.  The majority of people that I encounter in life don’t have near the sense of humor and wit that comes so naturally to others (myself included).  If you know how to be funny and empathetic, and are delicate and intelligent with highly sensitive topics, then pretty much any topic in life can be skewed somehow into something humorous.  Granted, I’m incredibly sensitive to this.  I would not have noticed it 7 years ago but I sure do now.  But, correct me if I’m wrong, it seems to me like a stroke is joked about and made fun of way more than other illnesses and disabilities.  I guess it’s because strokes are all-encompassing.  Any movement, function, amount of language, thinking, conversation – just about anything can be f’d up after a stroke so I guess it’s easy to say on TV, “my god she’s having a stroke or something.”

Maybe I wouldn’t be so incredibly sensitive about this if people within my own “support” system had not said some incredibly idiotic, stupid, insensitive things to me in the last 6 years.  Oh well, c’est la vie.

1
Mar

I can’t wait to move…….

Received this email yesterday, enjoy.

 

“Hello Amy,

 

My name is ———– and I’m the Director of Communications at —— Hospital. I saw your post on life after a stroke. It’s great to see you’re already publishing content informing your readers about the importance of health and wellness, and I wanted to pass along some information that I think you will find useful.
I would be happy to send along a stroke resource guide we recently created called ———. As you know, it’s important the general public is informed about the signs of a stroke and how to act fast. I hope you find it to be valuable and will share it with your readers!
Please let me know if you have any questions and if you would like to see our ———– graphic.
Best,

———-

Director of Communications

———- Hospital”

 

MY RESPONSE……..

 
Hi ———,

 

While I appreciate you reaching out, a much better way to teach the public about strokes instead of this generic information is to ask actual stroke survivors that have been through this hell for their advice. 
I’m shocked that I’m a medical professional, have this awesome blog and have not once been e-mailed and asked for my perspective on things or advice. I’m just shocked. I’ve only been contacted by organizations wishing to advance their own agenda, as in your request. It’s not to help people. It’s to further your own agenda. “

 

Amy

 

 

4
Jan

Filter

I have written about this many times in the past, but I’ve been corresponding with someone over e-mail that said something to me that was upsetting. Here is the blurb from the e-mail that got to me…..

 
“Immediately after the stroke, I basically said to anyone exactly what I thought, I was far from polite. I would call that my Filter, it was my lack of holding back an inappropriate comment. I became more filtered as time went, sort of like how a child becomes more filtered with age, so I am fairly filtered right now with my comments. I am honest but not offensive. I explain this because many arguments are moments when it doesn’t do any good to be unfiltered. Honesty is one thing, but sometimes it is most productive in an argument to respond, or not respond, a certain way.”

 

This lack of filter is a neurological condition that everyone I’ve ever met with a brain injury has experienced. It’s called Pseudobulbar Affect. Look it up.  When I was lying in a hospital bed 85% dead, I was told that I was being mean to some visitors.  The months following my stroke when I was about 60% dead, I was frequently told that I was saying inappropriate things, and that I needed to change the way that I interact with people.  A few years after the stroke when I had improved to about 45% deadness, some of the things that I said during that time were brought up to me as examples of how mean I was and why some people didn’t want to come see me.   I was told these things by the people closest to me that were supposed to love and support me the most.  I was told these things were a problem with ME and not a result of the absolutely horrible, devastating medical condition that had just taken over my entire life.

 

This meanness, this “lack of filter,” this honesty, this saying horrible, racist things like I did, this inappropriate laughing or crying is a neurological condition that CANNOT BE CONTROLLED.  It’s the weirdest thing in the world and utterly impossible for someone who has never had a brain injury to understand.  Just impossible.  To try to explain to someone that you actually can’t control the words that come out of your mouth is completely incomprehensible to most people, I understand that.  What I don’t understand is that no one in my life at the time took a few minutes to read a GD article or two in order to try to understand why I was acting like this.  How selfish of me to think that at the absolute lowest, darkest, and most vulnerable point of my life that anyone around me would try to increase their knowledge and learn how to better deal with my behavior that I COULD NOT CONTROL.

 

If you’ve stumbled onto this blog, it’s probably because you yourself or someone you know and love had a stroke.  Please read about PBA and – you won’t understand it, but you can educate yourself about it.  The last two abstracts I have linked mentions that damage to the cerebellum in and of itself can cause de-regulation of emotions, so I have both issues, lucky me!!

 

PBA

PBA

PBA

PBA

PBA

20
Dec

Life After Stroke

One major thing I learned the first few years after my stroke is that depending on who you talk to, you’re going to get an incredibly different impression of life after stroke.  There is a gigantic difference between talking to someone that’s years out and someone that this recently happened to, whose life is newly devastated.  Giant difference.

I received an e-mail a few days ago and it made me remember how helpful this place could be.  Talking to me, which I will be glad to do anytime, is going to be a lot different than talking to someone in the midst of all the hell.  Not that I don’t remember the pure hell that was my existence for those first 2 years after the stroke, but I’ve worked INCREDIBLY hard, I’ve done A TON of research, I’ve not taken crap from some people and cut some people out of my life that were hindering my recovery and I have managed to get back to a quasi-normal life.  I got married, just celebrated my 1st anniversary, got back to doing a job that I love, and am going to move to sunny Florida very soon.  Things are good.

I’m way past those initial feelings of utter hopelessness.  Those first couple of years post-stroke were absolutely horrible and often when I think about it I’m shocked that I voluntarily stayed in this world.  But I did.  The hell stops, life gets back to quasi-psuedo-normalness for most people.

I wanted to write this post for the person that e-mailed me and anyone else who is newer to the trauma.  Connecting with others going through a similar thing helps a lot.  For me, it was really helpful to talk to other younger people that this happened to, whose lives were turned upside down and inside out at a young age, I was 30 when it happened.  It helped.

Here is the e-mail I received…..

Hi Amy,

Do you still use this blog? I wanted to contact you because my husband had a cerebellar stroke that affected both sides of his brain also. He has been in the hospital for 2.5 months already. He has a long road ahead of him. He’s 37 years old and we have a one year old and a three year old. This is so hard my world has been turned upside down.

I hope to hear from you.

I can give tons of advice, but it won’t be the same as talking to someone in a similar phase of “after-life.”  Anyone out there think you’d like to connect with this e-mailer?

11
Dec

Checking In

For a long time this blog, aside from being pretty informative, was a gathering place for stroke survivors, a place where people connected and felt understood when they felt like no one in their real life understood anything. And uhh, yeah no one understands anything.

Friday is my 1st wedding anniversary. Good things can happen after a stroke. Even wonderful, amazing things can happen. I happen to have married the most wonderful, sensitive, brilliant, empathetic, kindest, gentlest man ever created. I really think he might be other-worldly and not from Earth because people like him just don’t exist on this planet.

That being said, as wonderful and amazing and understanding as he is, he’ll never fully get it. It’s not for a lack of trying, that’s for sure. But he wasn’t there. He didn’t see any of it. He didn’t see me with a bald head after brain surgery when I could barely speak, barely walk, and my right arm was tremoring all over the place. I could barely do anything. He wasn’t there and neither was his family so they’ll just never, ever know. I can explain things to him until I’m blue in the face, my mom can explain things, my friends(the ones that stuck around) can explain. But he’ll never fully understand because he wasn’t there. I started dating Pat nearly 3 years post-stroke when I had gotten back to looking and sounding(for the most part) quite normal. I not only looked normal, I looked from the outside like a person of above-average health. He didn’t see me in a hospital bed for a month straight and he didn’t know me the first 2 years after my stroke, when the most dramatic change and recovery happened. He doesn’t and will never know just how drastically far I have come from that day in 2011 until now. He didn’t see it.

So now, I’m facing a brand new challenge. My life is now filled mostly with people who I met post. There’s only a handful of people who were in my life before the stroke, stayed by my side, and are still a major part of my life to this day. Everyone else is new. Well, not new but I didn’t know them before the stroke. I look fine, I sound fine, I have a pretty advanced degree and a really good job with a great company. Things probably seem awesome to new people who I meet. But I still have so many problems that I just – sometimes I feel like I’m pretending in this life and everyone I’ve met in the last few years – including my husband – don’t really get it. People judge me for not wanting to socialize as much, for being incredibly self-conscious about things like needing him to cut my damn food, or not being able to walk and carry a drink at the same time. Gee, I wonder why I don’t wanna go to a party? Instead of defending me to others, I feel like I get judged for it. Instead of defending me, people make excuses for me. No one understands the trauma and devastation of it all. You’re in for a lot of heated discussions if you’re anything like me and won’t allow people in your life that expect things of you that just shouldn’t be expected because it’s what THEY want and think is appropriate. Appropriate for a completely able-bodied person. You’re in for a lot of sadness and loneliness.

But back to good things. The bad things described above happen a lot less frequently now when it used to be everyday. Hopefully it’s not everyday for you but for me it was, I didn’t have the greatest support system. Like I said before, the man I married almost one year ago is – maybe it’s because he was born in Canada that he’s so wonderful and kind. Are all of you Canadians like him? Damn you Canada, why can’t you be in a warmer climate??????

So, how is everyone doing? I’ve been feeling quite weird since a monster that mocked a disabled person on national television and did and said hundreds of other horrible things was elected president. Or was he? Faith in humanity once again very, very shaken. That needs to be restored yet again. Help me restore it, please?

24
May

Relocation

I’m moving south.  I’ve had issues with depression and anxiety and all that fun stuff since my teens, but since the stroke my mental health has absolutely bottomed out and gone kaput. Since the stroke, I experience intense, severe Seasonal Affective Disorder.  The winters have never been as miserable for me as they are now.  If winter is five months long, which is roughly 150 days, I was in tears probably 147 of those days this year.  It was on my honeymoon in the Bahamas that I was absolutely amazed at the drastic difference in my mood.  Drastic.  I was in the Bahamas over the Christmas holidays, which was planned well before Pat proposed because I badly wanted to avoid all that fake holiday crap.  And I was shocked.  I left for my trip excited – it was my honeymoon after all – but in all honesty not feeling that great.  Not feeling near the level of excitement that I thought I should be feeling.  But by the end of the trip I felt GREAT.  I mean great.  We got back to Pittsburgh and on the day after we got home we went out to breakfast and I was in tears again in the restaurant and said to Pat “I can’t live the rest of my life like this.”  He said “I know.”

So, we’re moving to Florida.  It took some convincing but ultimately, seeing his new wife in tears all winter I think was all the convincing he needed.  I have been told before how much relocation can change your life when you suffer from this, but I guess I had to experience it for myself to really understand that I need to make this move for my health.  It’s not just because I don’t want to live in Pittsburgh anymore, which I SOOOO don’t, but I need to live in a different climate.  I’ve tried everything else – light boxes, meditation(lots and lots of meditation), breathing exercises, regular exercise, diet, going to freaking tanning salons throughout the winter to try to get some UVB rays – but it’s not enough.  All of those things make me feel good for a time but it’s not long lasting.  Part of the problem is just living here and all of the reminders of bad things.   I’m sick and tired of living my life a few hours at a time around anti-anxiety pills and meditation, exercise, whatever.  I’m done.  I won’t do it anymore.  And functionally speaking, on the most beautiful, gorgeous, sunny summer day – I already walk outside and am fearful of stumbling, tripping, and falling.  Add snow and ice.  I need to leave this place.  Pat is putting my health and my emotional and physical needs first, ahead of his own – this I’m so not used to.  I had my boss over for dinner Saturday night and talked about it.  I will be able to keep my job since I work remotely right now and he is genuinely very excited for me.  He’s wonderful.  That made it feel real to me.

So, goodbye Pittsburgh.  I’d like to say it’s been fun, but……well I’ve had some fun here I guess.

IMG_2771

23
May

Seasonal Affective Disorder

Someone left a comment on my relocation post that said what I’m doing (moving to Florida) in order to treat the intense Seasonal Affective Disorder that I experience will be no more than a placebo effect if it works.  Nope, this couldn’t be more wrong.  It made me angry and upset that this was said because mental health issues are largely ignored and not taken seriously in this world.  There is a ton of published research about the benefits of moving to a different climate when you suffer from this.  Wanna read some?  Here ya go….

SAD

SAD

SAD

SAD

SAD

SAD

SAD

SAD

IMG_2771

 

17
May

Walking Bike

I want this both for myself and my future therapy gym.

From Dean.

walking bike for stroke rehabilitation

Massive amounts of therapy available in one intervention.
Balance.
Walking.
Upper limb extension.
Hand grasping.
Sensation – Wind blowing over skin.
So why doesn’t your stroke department have this?
https://www.facebook.com/724327641037707/videos/736648413138963/

1
May

Dizziness and Nausea

I just received this email…..

“Good day. My brother had a stroke of the left cerebellum a month ago. He had decompression surgery and was in Critical care for 3.5 weeks. He went to rehab 4 days ago but he is having trouble completing the exercises because he is so dizzy and nauseous. Was this your experience? Do you have any suggestions? Trying desperately to find resources to help him.”
My reply…..
“It’s wonderful that you’re trying to help your brother. I wish I had someone do such things for me. That didn’t happen to me but I’ve heard of others saying the same thing. I wish I could give you names to get in contact. I’m sorry.

My suggestion is while the physical exercises make him dizzy and nauseous, get him into meditation ASAP. ”

Please go here for a better, affordable alternative to learning Transcendental Meditation.

 

Can anyone give him any suggestions?

 

 

26
Feb

Pseudobulbar Affect

Hi everyone!  I needed to come back to the blog and write a post about this because I’ve been talking a lot about it and trying to explain it to my hubby in the last few days.  It’s oh so important and can quite frankly ruin relationships. And as I’ve been reading about it lately it seems it’s way under diagnosed and most families sweep it under the rug and don’t try to understand it. Mine sure as hell didn’t. My family was only concerned with THEIR feelings and how this affected THEM.  Not at all how this terrible, devastating, tragic, horrible thing affected ME and my life.  My immediate family members and SO at the time couldn’t have been more self-involved if they tried.

It’s called Pseudobulbar Affect or PBA for short. It’s when you have episodes of uncontrollable crying or laughing or anger or just saying bizarre things. It’s an emotional disconnect when what shows on your face or how you emote or what you say is completely opposite of what’s in your head. It might be one of the weirdest things that I’ve experienced after the stroke. At times my words didn’t at all match what was in my head. A lot of people have it after a stroke, not everyone.  Five years later and I’m still very much struggling with it. It’s utterly impossible for a normal person to understand this, it’s so very weird. The most you can do is provide reading materials to people and hope that they read it and try to understand, as my husband is trying.

For the first year or two after the stroke, it was unbelievably severe and intense that I literally couldn’t speak without bursting into tears. I could be speaking about a TV show and just start sobbing. Now, it’s mostly the episodes of intense anger that I’m dealing with. Anger sometimes over stupid little things that wouldn’t at all bother someone else.  Because of this, I tend to socially isolate myself, remove all negativity and drama from my life and I choose only to be around a select few people that make me feel good. This is because I’m terrified of how I will react.

PBA is uncontrollable. It’s totally beyond your control. Therapy can give you coping mechanisms but talking about it ad nauseum won’t make it go away, nor will medicine. You literally cannot control your emotions.

Here’s some good reading material  that I’ve found on it in the last few days….

PBA 1

PBA 2

PBA 3

Written by Mrs. Patrick Elder

16
Nov

New Life

I’m getting married next month to the most wonderful man who ever existed on the planet.  He might not be real.  He is an empath, he is the funniest human being ever, and he is the most brilliant man I have ever met.  We’re not having a wedding, just going downtown and getting married because we want to be married.  When you have a stroke, man do I know the emptiness, loneliness, intense fear, suicidal thoughts and feelings, people not understanding anything and not trying to understand, and hundreds of other bad feelings.  But good things (can) happen after you get through Hell.  I’m not saying they will, but they can.

So, I’m going to stop blogging for now, possibly forever.  I’m going to go live my life as best as I can.  And I need to try to get to a place of inner peace.  The anger that I have is eating me up inside.  It comes and goes, but when it comes it is incredibly intense.  Barring my therapist who is unbelievably wonderful and also might not be real, Western Medicine has done little to nothing to help me with this.  I believe the way out of this is meditation.  At least an hour of it everyday.  And eventually, hopefully, I will feel ok all the time.  I will never delete the blog because I happen to think it’s chock full of a ton of great information all in one place.  And if anyone ever has any questions, feel free to email me.  I’m here to help.

So this is Dr. Amy signing off, for now…….